Wednesday, October 27, 2010

If I've said it once, I've said it a thousand times- parenting is not for the faint of heart. Tube weaning continues and I guess it continues well, though how much I really believe that varies day-to-day, sometimes hour-to-hour.

He's down nearly 2 pounds. He didn't really have 2 pounds to spare. He wasn't skinny before, but he was definitely slim. He really hasn't gained weight in months, but he had gained a little height, so he'd already gotten quite slim. Now he's downright skinny. I dread taking his shirt off and when he leans over a bit and I can see each of his ribs, I literally have to look away. He appears to have stopped losing weight, which is good. But dear God, I need him to gain some.

The last few days I've had to fight the urge to tube him some calories time and time again. I'm still not ready to say that I won't. Right now he's only getting 14oz of water and 2 tsp of olive oil in the tube. I keep considering switching out some of the water for milk. Right now 18 calories per ounce sounds like heaven.

He drinks at least a little water every day but does not show much interest in drinking anything with calories in it. We did have a good report last week that he'd finished the few ounces they put in his cup and then they refilled it and he drank a little more, but that was an anomaly. The only thing keeping me from tubing more calories is the fear of turning off any trigger his body has that eating equals living.

He really is eating well, honestly. There are bad days, certainly. Sunday he had a meltdown (related to being two, not related to eating) and refused to eat anything except two slices of American cheese for dinner. But then he woke up at 3am starving and proceeded to eat 36 Cheez-Its before finally deciding he could sleep again. (Yes, I counted. It was 3am, what else was I going to do?) We also have Hallow Leg Days, which may as well be called "Fill Trish's Soul" days for how good they feel. Mostly we have what I would deem adequate days. If we could just get even a paltry amount of liquid calories into him, he'd be in far better shape. For now, I just have to be content to see him drink water.

He definitely has turned a sharp corner with drinking. While he's not drinking enough that I feel like I can further reduce his night drip, he now reliably drinks SOMETHING every day. He really prefers an open cup to just about anything else. This leads to a lot of messes in our house. He is slowly understanding that you don't have to tip the cup completely upside down to get something, but it is a bit painstaking. You don't dare help him, though. He's two now and needs to do it by himself. Any attempt to guide the cup so that he doesn't half drown himself results in him throwing the cup across the room. We now have an official "time out" spot with which he is becoming familiar.

I feel pretty confident that he's going to get there (wherever "there" may be) with drinking soon. Soon to me means hopefully before he's 3. With Robbie, you never know. It could be tomorrow. He likes to do things in bursts. The question for me now is if or when he will start to eat and/or drink enough to not just survive, but thrive.

I feel almost selfish or ungrateful for saying that. The fact that he is now eating enough to survive is incredible. It's been two years since I've had confidence that he could or would. It will be two years in November since his eating went dramatically downhill. I still have a running excel file of everything he's consumed the last two years to prove it. It starts November 14, 2008. We actually kept track on paper before that. The really interesting thing about that (beyond being a shining example of my OCD) is that it STOPS on October 18, 2010. Yes, that's correct, I've stopped charting his food intake.

Don't get me wrong, I still do a mental calculation of everything he consumes. I'm a walking encyclopedia of the caloric content of anything remotely toddler chewable. But I'm not writing it all down, adding it up and calculating the ratio of calories to kilos of weight. The reason? It's too hard now. He is now, at 27 months, finally off baby food. There are still a few containers sitting in a bowl where he can get to them if he wants them and I'll probably try to sneak them in for a quickie meal on a busy Saturday sometime, but that's it. He now eats table food just like a big boy. And it's a lot harder to keep track of. You cut a grilled cheese into 100 bites size pieces and then try to keep track of how many eat eat, how many he threw and the cat ate, and how many are left when he's done.

At daycare, it's even worse. The kids steal food from each other all the time. Things end up in the floor from who knows where. Sometimes extra food gets shoved at each other. I had to stifle a laugh the other day when one of my favorite classmates of Robbie's absolutely INSISTED that Robbie eat a piece of his chicken. Robbie was having no part of it. It was good to see I'm not the only one who can't force him to eat. The reports home say "turkey sandwich- all, green beans-most, apples- none." but I don't know how much turkey was on the sandwich or what the serving size of green beans was. I know that they tell me he's one of the better eaters in the class and I have to accept that. I make sure to keep them stocked with high calorie snacks (since most of theirs are not corn-free, I supply almost all of his from home) and hope for the best.

I can see improvement all over the place and it makes me feel good, but one look at those ribs again and my own stomach starts to churn. Intellectually, I know this is temporary. We're only a month into a very real tube-wean and the weaned kids often take months to start to gain again, but sometimes, I don't know if I have it in me to keep going. I have a drive to nourish him and no matter how much my brain says this is good for him in the long run, my heart aches to fix it now.

As much as it is difficult to watch Robbie go through, it's also very isolating for me. When Robbie is having a tantrum because I told him he can't climb the table and jump off and I need to commiserate, lots of friends can nod and smile and chuckle and tell me that it does get better someday. But Robbie's unique in a lot of very good and very frustrating ways.

As uncommon as it is to have a tube-fed kid, it's even more uncommon to find a family who has weaned from a tube. Becky gets the brunt of my neurosis in hours-long late-night phone calls. But the rest of the day, I'm just wringing my hands hoping I'm not fucking him up any more than absolutely necessary. People ask how he's doing and I answer that he's doing well, but like everything, the answer comes with an asterisk. "He's doing well*."

*he ate yesterday and even drank an ounce of water, which is gobs better than a few months ago, but he still has a tube and doesn't really talk and I don't know if it's him or because I'm an utter fuck up as a mother.

I never speak the asterisk aloud, but some people will go on "Oh good! So he's eating now?" and again, I have no idea how to answer that. Yes, he does, but not quite enough and yes, he still has a tube and no, I don't know when he'll get rid of it, but if you could consult your magic 8 ball, I'd kinda like to know, too. Being polite, though, I usually just say he's getting there and try to move along. It's just not something that your average person understands, and if one more person asks if I've tried feeding him ice cream, I'm afraid I'll end up in jail. The headline will read "Mother of Non-Eating Child Arrested for Stabbing Man with a Spork." I wonder if they'd let Robbie visit during chow-time? He eats better in a group.

All in all, I do a lot of internal hand-wringing. I think I'm outwardly holding it together pretty well, but there are days I feel like I'm holding on to the ledge of reason with just my fingertips. I'm just waiting for Robbie to throw me a rope.

10 comments:

Tricia,I have been 'wringing my hands' too just waiting for an update. Sounds like you are making some real progress! I know it is not as much as you want and I can only imagine how hard this is. I just want to offer what little encouragement I can and tell you that you are a super mom and I am in awe of you. You handle this all with such gusto and grace. I know it would be so much easier to swear and stomp around and maybe even wallow a bit and I am certain you have your moments but that is all you allow it to be, a moment. That is exemplary and worthy of being commended. So, I commend you and I think you rock!

You are doing the right thing! He's proven time and again that he makes great strides...in his own time. Just have faith and hang in there (easier said than done I know). Your kid won't drink enough and mine wants to drink twice what a reasonable toddler should be able to handle. Can't we just even them out a little?

I know what you mean about the asterik thing. Yesterday at my dr appt my hygenist had asked me about my kids and we got to talking about when they were born. When I mentioned Bree was born at 25 weeks she kinda gasped and said "but she's okay now, right?" I immediately responded with "Yes, we still struggle with eating, speaking, and physical abilities but other than that she's doing great!" Then in my mind I said to myself "'other than that'??? What the hell Tasha...that is almost everything!"

I know how you feel. I try to have a positive attitude about everything, but some days it is just so hard.

Right there with you Trish. It's been a hell of a week here too. Thriving was always the goal, surviving is just the first plateau where us tube mamas need to cut ourselves some slack and take a deep breath. Remember where we were two years ago, a year ago? We're not there now and I think we'd be so happy to hear where we are now if we could meet ourselves and have a little chat.

Have you talked to your docs about trying periactin? We are having some luck with Cam on this medicine, even though he's had Hand, Foot and Mouth and then followed up with a cold since being on this medicine. For Cam it seems this really does make him want to eat, though maybe not drink as much. From people I've talked to about it I've heard that often kids are thirsty from the periactin and drink more volume of liquids. Worth a shot to get him around the next corner of the maze that is drinking and eating enough, and you can stop at any time.

I know what you mean about the being different thing. If I had a nickel for everytime someone asks "So is he walking yet??" I'd be rich and my almost two year old still wouldn't be walking, but he's almost there.. Or so I keep telling myself. Skyler doesn't talk much either, I just keep telling myself it's because boys develop language later than girls.

Robbie will get through this. Small amounts of progress at a time.. All we can do is to take it day by day right. And don't worry I don't think you are f*ing him up, if anything he's going to benefit from it in the end.

And what about adding some more illustrations? I don’t want to offend anyone, text is really nice. Just according to the scientists people acquire info much more effective when there are certain helpful pictures.

I've been thinking about you guys a lot. Glad it's going relatively well, though I can only imagine how agonizing it is for you. Wow. And dude, this sentence really brought tears to my eyes: "I know that they tell me he's one of the better eaters in the class and I have to accept that." I had to read that like five times, just marveling each time.Sending lots of prayers for drinking and for weight gain. :)

And the darn snack-makers REALLY need to stop putting corn in everything! I read like 15 cracker labels in the grocery store recently and all except the Ritz and Cheez-its had corn. What is up with that? (I'm very very thankful for being able to feed some wheat now, but people don't realize what a PITA a corn allergy is, eh?)

Oh and you are one of the BEST mothers around. By far. I have no doubt about that.